Abstract

Background Assertive outreach has been established to care
for‘difficult to engage’ patients, yet little is known about how
patients experience their disengagement with mainstream services and later
engagement with outreach teams.

Aims To explore the views of disengagement and engagement held by
patients of assertive outreach teams.

Method In-depth interviews were conducted with 40 purposefully
selected patients and analysed using components of both thematic analysis and
grounded theory.

Results Patients reported a desire to be independent, a poor
therapeutic relationship and a loss of control due to medication effects as
most important for disengagement. Time and commitment of staff, social support
and engagement without a focus on medication, and a partnership model of the
therapeutic relationship were most relevant for engagement.

Conclusions The findings underline the importance of a comprehensive
care model, committed staff with sufficient time, and a focus on relationship
issues in dealing with ‘difficult to engage’ patients.

In England, assertive outreach teams have been widely established to reach
patients who, in mainstream services, are ‘difficult to engage’
(Department of Health, 2000).
Research has so far focused on how service configuration, for example a low
staff–patient ratio, influences outcomes
(Burns et al, 1999;
Priebe et al, 2004);
yet little is known about what staff should actually do to engage patients and
what psychological processes might cause previously disengaged patients to
engage with assertive outreach teams (Lang
et al, 1999). This study therefore explored with
qualitative methods the reasons why patients first disengaged with mainstream
services and later engaged with assertive outreach. Particular emphasis was
put on the experience of patients from an African–Caribbean background,
as this group has been shown to be most dissatisfied with services
(Parkman et al, 1997)
and overrepresented in the case-loads of outreach teams
(Sainsbury Centre for Mental Health,
1998; Priebe et al,
2003).

METHOD

Sampling

Patients were recruited from nine specialised assertive outreach teams
across London (Wright et al,
2003). Teams were selected to cover inner-city and suburban areas,
and both statutory and voluntary services. Inclusion criteria for patients
were:

Assertive outreach team workers provided patients who fulfilled these
selection criteria with verbal and written information about the study and
asked them to take part. Seventy-three participants who volunteered for the
study formed the strategic sampling pool. From this sample pool, 44
participants were contacted and interviewed through liaison with their
assertive outreach workers. Four patients were later excluded because it
became clear in the interview that they did not fulfil the inclusion criteria.
Purposive sampling was used to select patients for interviews. Emerging themes
were tested by interviewing counterparts, e.g. patients of different gender,
age and ethnic background. Once the type of patient for the next interview was
identified, the interviewee was randomly chosen from the sub-sample of
patients with the desired characteristics, and the keyworker was approached to
initiate contact with the patient. Patients were recruited until saturation
was reached.

Of the 40 patients whose interviews were analysed, 11 were women and 29
men. The mean age was 40 years. Thirty-two patients were single and 36
unemployed. The ethnic background was African–Caribbean for 18 patients
(7 first-generation and 11 second-generation), White UK for 16 patients,
African for 4 patients and ‘other’ for 3 patients. Thirty-three
patients had been diagnosed as having schizophrenia or psychosis-related
disorder and 7 as having psychotic symptoms as part of a mood disorder. Only 2
participants had no experience of hospital, and 24 reported experiences of
sectioning.

Material

Patients were interviewed by a trained researcher who was not involved in
treatment. The researcher explained the nature and purpose of the study and
obtained informed consent. Twenty-five participants were interviewed in their
own home and 15 in the base of their assertive outreach team. Participants
were asked to recount their experiences of using mental health services from
the time of their first contact. Special attention was paid to episodes of
disengagement and engagement with services, the circumstances surrounding
them, and patients’ explanations as to why and how they disengaged and
engaged. Emerging themes were explored throughout the data gathering process.
These themes were specifically addressed in further interviews, and
re-analysed and further developed in an iterative process. The length of
interviews ranged between 25 min and 75 min. All interviews were audiotaped
and fully transcribed for analysis.

Analysis

We analysed the material using a method comprising components of both
thematic analysis (Boyatzis,
1998; Flick, 2002)
and grounded theory (Glaser & Strauss,
1967). The QSR*Nudist, 4 database software was used for managing
and analysing data. Themes, categories and memos were coded into a database,
which was used for continuous comparisons and referencing across interviews.
The first 25% of interviews were coded line by line. Once assumptions about
themes to be further explored were reached, longer passages were coded, unless
there were statements of particular interest, when coding reverted to line by
line. One important aspect of the analysis was to identify which themes out of
the range reported by patients were actually linked to processes of
disengagement and engagement. For example, a negative experience in a hospital
might have been significant, but not necessarily have influenced the
patient’s decision to disengage or engage with services.

The interviewer carried out analyses of all interviews. Two researchers of
second-generation African–Caribbean ethnic origin helped to analyse
interviews with African–Caribbean patients. Two other researchers
separately analysed the interviews to check the validity of the analysis –
one of them re-analysed the first 20% of interviews in the initial
phase of the study, and the second researcher reviewed all interviews at the
end of the analysis. Findings and emerging themes were discussed – in
both one-to-one and group meetings – by an interdisciplinary team
comprising researchers with psychiatric, psychological and nursing backgrounds
and both with and without clinical experience.

RESULTS

Three main themes emerged from the analysis of patients’ accounts of
disengagement and engagement (Table
1).

Frequencies of themes (including combinations) reported by participants
as reasons for disengagement with mainstream services and engagement with
assertive outreach teams (n=40)

Processes of disengagement

Desire to be an independent and able person

Twenty-six patients identified a difficulty in accepting mental illness and
the role of the patient as main themes in the break-down of their relationship
with mental health services. The patient role required a shift in their
perception of themselves as independent individuals:

‘It was a kind of state where you think you are aware of things but
you don’t know what you are doing’ (Interview 6, man aged 51).

Often, this led to a period of adjustment during which the patient tended
to avoid mental health services and tried to carry on with life as before in
order to ‘prove them wrong’. A patient who described himself as ‘
having a good head on his shoulders’ prior to illness said:

‘I think that a major problem mentally ill people face is their
having to accept their diagnosis.... If they tell you you have cancer and you
have about 6 months to live, you feel much better than if they tell you you
have a... mental illness’ (Int.9, man aged 32).

A psychotic mental disorder can affect all aspects of a patient’s
life:

‘the kind of identity of like who you are, like your job and other
things that define, kind of disappear [because] you are just trying to get
better... you become your sickness’ (Int.34, man aged 33).

However, even when patients accept that they are ill, the desire to be ‘
as normal as possible’ may persist and is often the reason why
some people disengaged after several years of regular use of medication in a
bid to regain their old identity:

‘probably that 6 months where I stopped the injection is more likely
me trying to get out of the system and getting my life back to normal...
it’s been 8 years on the injection, seeing doctors’ (Int.20, man
aged 28).

This sometimes happens after a switch of medication, which may increase a
sense of well-being and a belief in one’s ability to cope without
medication. Patients also have to deal with a changed perception by other
people. Relationships with partners, family and friends are altered or break
down. The stigma attached to mental illness and the complexity of changes
patients face can lead to a disengagement from services:

‘Sometimes you are scared that they will find out you have a mental
health problem and they won’t want to know you anymore. I mean
schizophrenia is quite a frightening world, because the media made it that
way’ (Int.4, woman aged 48).

However, relatives can sometimes facilitate acceptance of illness and
treatment:

‘They saw that I was becoming ill and... it happened two or three
times, my mum and dad could see it coming on but I couldn’t [because] I
was ill. I thought that I weren’t ill but I was’ (Int.10, man aged
47).

Lack of active participation and poor therapeutic relationships

Twenty-two patients specifically mentioned not being listened to by
clinicians and a lack of active participation in treatment decisions as a
reason for disengagement. Patients felt alienated when clinicians failed to
acknowledge their experience and their view of illness:

‘I felt like they never listened to me and they were just making
choices for me and if they listened to me a bit more then I might have felt a
bit more like I was. I just felt that my life was out of control and I
didn’t have a say in what I was doing’ (Int.20, man aged 28).

Communication with psychiatrists was seen as especially difficult and
marred by power issues. Eleven patients mentioned not being listened to by
their psychiatrist as an important reason for disengagement:

‘I just felt I was fobbed off... it was definitely a case with some
psychiatrists of “Them and Us”. And you couldn’t talk on the
level at all, so in the end you just didn’t say very much.. .I used to
think who it benefits, and thought, not me’ (Int.23, woman aged 48).

It is also the manner in which mental health staff behave towards
patients:

‘It’s like just general gestures they give out with their body
language and their posture, itjust suggested that they didn’t want to
hear what you had to say... start answering the question and you’d be in
the middle of what you were saying and they’d catch on to one particular
word out of what you were saying and start talking about something they want
to talk about, which was very insulting’ (Int.36, man aged 22).

Nine patients mentioned patronising by mental health workers:

‘In other words they are trying to take over your life, treating you
like a kid and some of them are younger than you’ (Int.16, man aged
35).

The issues of poor relationships and the passive role of patients were
amplified further when it came to the experience of hospitalisation, which 11
patients reported as a reason for disengagement. Fourteen patients described
the first admission as a negative experience which affected their view of
mental health services for a long time:

‘So our relationship started out really badly, just me and
psychiatric services, it was just so violent so... it’s taken me a long
time to develop any sort of trust between me and psychiatric services’
(Int.28, man aged 45).

It also can be an isolating experience:

‘By not being in an environment I knew, understood, I had never been
in hospital before, I felt completely alienated from everyone, from
society’ (Int.8, woman aged 23).

Thirty patients reported their dislike of the rigid rules, regulations and
restrictions on freedom they face in hospital, with 14 of them using the word ‘
prison’. Ten patients reported incidences of perceived injustice
and even abuse, including rape and beatings, and 25 reported they were
subjected to enforced medication:

‘I did not like it one bit, they treat you bad and they hold you down
on the floor and they inject you... they lock you in your room, you
can’t go outside, it was horrible’ (Int.33, woman aged 27).

However, bad hospital experiences on their own did not necessarily lead to
disengagement. Fear of hospitals motivated some patients to cooperate with
services and comply with medication to avoid further admissions.

Loss of control due to medication and its effects

The side-effects of medication and associated loss of control were
discussed by 28 patients, and 15 said or inferred that this was a main reason
for them to disengage. Sometimes, unpleasant effects were so overwhelming that
they defeated the intended therapeutic purpose:

Patients found that their experience of adverse effects was not
acknowledged enough by clinicians. Losing control over some important area of
life owing to this neglect led to disengagement:

‘I can’t do things that I want to do. I want to come off this
depot... it makes me put on weight, it stiffens the joints, it’s
affecting my fertility, my ejaculation system. I want to have children but I
can’t have children if I am on depot. So I think it has taken over my
life sort of thing’ (Int.29, man aged 31).

Patients in education reported a wish to discontinue medication because of
adverse effects on concentration:

‘When the exams were fast approaching, when I have to study... you
feel drowsy and everything like that’ (Int.26, man aged 37).

Although interrelated with the themes of poor therapeutic relationships and
the desire to be an independent person, complaints about the effects of
medication and resulting loss of control were often focused on a single and
potentially negotiable issue. When these problems were left unattended,
patients felt alienated when they were otherwise willing to engage.

Processes of engagement

Time and commitment

Twenty-two patients reported that assertive outreach workers invest more
time and show more commitment to the care of patients. They were described as
easy to contact and able to visit patients at home:

‘Well, the outreachteam are better because they have more people
around. I mean if I need something, I just pick up the phone and they come
down. I don’t have to make an appointment or anything which is
good’ (Int.1, man aged 46).

Staff’s willingness to listen to problems and help was
appreciated:

‘Well, the main thing is they listen and you can talk to them when
you need someone to talk to’ (Int.30, woman aged 46).

Time and commitment invested in care gave assertive outreach team staff the
potential to build mutually trusting relationships, and the consistency over
long periods of time appeared particularly important:

‘I think, because what the team and I have been through, they have
seen me in a good position and the team have seen me in bad conditions, so
they have an idea, a much better idea and understanding of my moods and how to
reacttothings, so we have a good working relationship’ (Int.9, man aged
32).

The time and commitment of team staff are particularly valued in comparison
with previous experiences:

‘I’ve done a lot of intense work with one of my social workers
before I was in the assertive outreach team, but since I have been in the team
there is always someone to talk to, if you want to talk to someone. Even if
one of the people is off, there is always someone else there to talk to’
(Int.2, man aged 28).

Social support and engagement without a focus on medication

The social and practical nature of the assertive outreach service was
perceived as a positive distinguishing feature by 31 patients, and 11 reported
receiving social support in a form of companionship, joined outings and
activities. Team workers were frequently described as being interested and
friendly:

‘They talk about day-to-day stuff with me you know. It’s
interesting really, they take an interest in my life’ (Int.1, man aged
46).

They were willing to see patients as persons not just as ‘illness on
legs’:

‘I talk to him about films and theatre and books and arts, and which
balances it out because I don’t really want someone coming to my flat
making me feel mad’ (Int.19, woman aged 39).

Patients saw an option to engage with services in a way that was not
entirely focused on medication:

‘You don’t talk to them purely about how I have taken my
tablets and this. I mean it is broader than that’ (Int.23, woman aged
48).

Patients stressed that mental illness often led to a breakdown of close
relationships and was a very isolating experience. The attempts of the
assertive outreach team to increase their social activities by taking them to
restaurants and organising leisure activities and outings was frequently
discussed:

‘Sometimes we might just go out and have a cup of tea or coffee at
the café, we might go swimming, we might go on an outing or whatever,
that’s what I like, that’s what’s good about them they they
are quite, like sociable’ (Int. 7, man aged 18).

Help with practical day-to-day issues was also appreciated and mentioned by
20 patients. Help with financial matters such as dealing with the social
services, housing department and banks was most popular. Assertive outreach
teams were also credited with bringing more structure to the lives of
participants by organising educational opportunities and paid or voluntary
employment, and by helping with organising housing and necessary repairs,
shopping and escorting participants to appointments:

‘You’ve got to realise that apart from being sick, you’ve
got your financial life as well which is different from your medication, you
know, because social security tend to mess you around. You need someone to
stand up for you, give you your giro’ (Int.39, man aged 43).

Two patients complained about assertive outreach teams encouraging
dependency by offering this type of support, but acknowledged the willingness
of the team workers to negotiate reducing the contact if requested.

The partnership model for therapeutic relationships

A need to be treated seriously and afforded an active role in making
decisions about their treatment was emphasised by many participants and
explicitly outlined as the reason for engagement by 11 patients. However,
examples of positive experiences as reasons for engagement were harder to come
by. Nine patients acknowledged their relationship with their psychiatrist as a
facilitating factor in their engagement with services. They reported that
assertive outreach team psychiatrists, like other members of the team,
listened to them and saw them as people, not just sets of case notes:

‘He wants to know about everyday things, not just how are your
pills... It is broader. That makes up you know, it’s a better
relationship and you feel oh, you know I wouldn’t mind sharing what I
do... .But when it was very patronising I just put shutters up’ (Int.4,
woman aged 48).

Patients felt that their experience of illness was taken on board and that
they were acknowledged as active participants in therapeutic
decision-making:

‘When I suggested that I wanted to stop medication for a while, he
actually let me and he did actually come across as if he were concerned about
me hallucinating again and he wasn’t too pushy about things... he warned
me I may become delusional again, but he did not come across as though he was
trying to prevent me from doing it... he wanted me to be more involved in my
own health’ (Int.8, woman aged 23).

The gradual building of relationships enables assertive outreach staff to
win the trust of people and communicate effectively about treatment:

‘I trust him to do what’s best for me even when I don’t
know what’s best for me.... It took time, initially I was very
suspicious of him when I first got put in contact with him. I was mostly in
crises.... I did think initially he waslike another CPN [community psychiatric
nurse] that I had, that he’d bin me for the smallest reason, but
that’s not been the case actually’ (Int.19, woman aged 39).

This sort of trust enabled some patients to stop hiding symptoms for fear
of being sent to hospital and to assume a more active role in managing their
health:

‘I always tell them, when I have a difficulty in sleeping now I talk
to them, I tell them my problems. Before I used to deny that,.. .I’m not
ill, I don’t want to go to hospital, I don’t want to know you, I
didn’t want to open my door, you’ll have to break in with police
and they arrest me and take me in. But now I openly talk to them’
(Int.25, man aged 31).

Findings in African–Caribbean patients

African–Caribbean patients did not mention qualitatively different
views to other patients. If differences appeared, it was rather the degree and
frequency of some experiences that varied between ethnic groups. Some
African–Caribbean patients (4 out of 18) particularly emphasised the
effects of stigma and peer-group pressure for disengagement. Twelve patients
of this group expressed views suggesting they had a compliant rather than an
engaged relationship with the psychiatrist (compared with 6 out of 15 White UK
patients):

‘I’ve been taking my medication just for the fact that I
don’t want to go back to hospital... but, if I had a choice of taking
the depot or not taking it, I wouldn’t take it’ (Int.29, man aged
31).

Contradictory evidence

The analysis did not reveal substantial evidence that contradicted the
reported themes. Yet, as already mentioned, negative hospital experience can
be a reason for engagement when compliance with treatment is motivated by the
desire to avoid further hospitalisation. Also, the experience of consequences
of disengagement might have contributed to a willingness to engage:

‘Yeah, I have stopped taking it... and then I become ill so now I
know I have got to stay on it completely’ (Int.10, man aged 47).

DISCUSSION

Despite a high individual variability in the circumstances and experiences
involved in engagement and disengagement with services, the study identified a
small number of fundamental processes. The identified themes appear plausible,
clear and partly linked.

Methodological issues

The study had some methodological limitations. Most importantly, it focused
on patients who had originally disengaged from services and later engaged with
assertive outreach teams. Thus, patients who even the assertive outreach teams
failed to engage were not included. Such patients might have different reasons
for disengaging from services, and obviously were not motivated by the
processes described here leading to engagement. However, even for patients who
do accept assertive outreach team care, the sample was probably not
representative. Only patients who were prepared to participate in research and
conduct an interview with a researcher were included. Moreover, the study was
conducted in London, and assertive outreach team patients in other areas and
other services may have had different experiences. The study placed
users’ views and testimonies at the centre of the methodological
approach. In the vast majority of cases, the researchers believed the
participants’ accounts to be accurate and pertinent. Clinicians may have
expressed different views and stated good reasons for their behaviour that was
criticised by the patients, but their views were not assessed in this
study.

Disengagement

The key themes that emerged in our study are often interrelated and
coexistent in the experiences of individual participants and, to some extent,
reasons for disengagement and engagement are two sides of the same coin.
Disengagement was often a result of the struggle against loss of autonomy and
identity as a part of the experience of mental illness. Not all clients with a
history of disengagement were people who resented mental health services. In
fact, when asked to describe the characteristics that made a bad keyworker, 9
out of 20 participants answered that they had never had a bad keyworker. In
line with research related to chronic physical illness
(Charmaz, 1997), this finding
would indicate that identity issues are vital for coming to terms with the
impact of mental illness (Watts &
Priebe, 2002; Tait et
al, 2003). Moreover, issues around psychological adjustment
may still be dormant in some patients with long-established illness and not
just occur in the newly diagnosed (Spencer
et al, 2001). Some participants had been in a compliant
relationship with services for many years before they made their ‘bolt
for freedom’.

Autonomy was also compromised by the powerlessness patients felt in their
relationship with services in general and psychiatrists in particular. The
study demonstrated that feelings of not being listened to can often lead to a
fundamental breakdown in the therapeutic relationship and consequently to
disengagement. This is especially true when a patient’s complaints about
undesirable side-effects associated with medication are disregarded despite
profound effects on important areas of a patient’s life
(Sainsbury Centre for Mental Health,
1998; Gerber & Prince,
1999).

Engagement

The results indicate that patients whose relationship with mental health
services has broken down can become more engaged if they feel listened to and
have a genuine say in decisions about their care. The current approach of
assertive outreach with small case-loads seems useful as it enables keyworkers
to put in time and commitment, which is appreciated by patients
(Sainsbury Centre for Mental Health,
1998). It enables staff to form trusting relationships with
patients and familiarise themselves with the particular circumstances of their
lives. This facilitates the making of informed decisions about treatment
options. For many participants, moving away from an exclusive focus on
medication was a crucial element in improving their therapeutic relationship.
The interest of team staff in the patients’ lives was regarded as a
welcome antidote against patients being reduced to their symptoms, and efforts
to increase social activities and organise educational and work opportunities
were important. Practical help with housing and welfare was also seen as an
aspect of recognition of the reality of participants’ lives
(Hannigan et al, 1997;
Billings et al, 2003).
The comprehensive care approach of assertive outreach should help to avoid a
sense of being confined to the role of mental patient. The practical support
enabled patients to regain control over their lives. The sense of autonomy,
the loss of which has proved so important in disengagement, is further
strengthened if people are given the chance to be actively involved in making
decisions about their treatment and the best ‘anticipatory action’
to avoid relapse (Weaver et al,
2003). Building the necessary relationship often requires time and
reliable commitment.

Potential clinical dilemma

To feel supported by staff through ‘ups and downs’ helps to
establish a ‘working relationship’, and the psychiatrist who was
prepared to stop medication in line with the wishes of the patient was
perceived as genuinely concerned and caring – but might have agreed to a
treatment that was incompatible with evidence-based medicine. This example
highlights a potential dilemma around current policies on ‘difficult to
engage’ patients who might pose a risk to themselves or others
(Watts & Priebe, 2002). A
strong focus on risk containment and an insistence on interventions following
evidence-based guidelines may interfere with promoting a partnership model of
care that – over time – helps those patients to engage. A move
away from controlling the patient towards exploring and accepting decisions
made by the patient appears essential in facilitating greater engagement. One
might conclude that clinicians and services who are able and willing to engage
genuinely with patients on a partnership level are, in turn, easier for the
patients to engage with.

Implications of the study

The findings suggest that in order to treat ‘difficult to
engage’ patients in practice it is important to have, first, a
comprehensive care model with social and practical support and no exclusive
focus on medication; second, committed staff with sufficient time; and third,
a stronger emphasis on relationship issues with patients as partners. Further
research might investigate whether, and if so, to what extent, the processes
identified in this study apply to other patient groups and other settings in
community mental health care, and explore the views of the clinicians involved
and relate them to those of the patients.

Clinical Implications and Limitations

CLINICAL IMPLICATIONS

A comprehensive care model with social and practical support, an avoidance
of an exclusive focus on medication, and committed staff with sufficient time,
help to engage ‘difficult to engage’ patients.

Relationship issues are central to disengagement and engagement, with
patients preferring a partnership model and an involvement in clinical
decision-making.

African–Caribbean patients do not have qualitatively distinct
processes of disengagement and engagement.

LIMITATIONS

Only patients who were able and willing to participate in research were
interviewed, so that the sample was not representative of all assertive
outreach team patients.

The study was conducted in assertive outreach teams in London and results
cannot necessarily be generalised to other areas and services.

Acknowledgments

The authors thank Rose McCabe, PhD, Gemma Jones, BSc, Cecilia Faduola, BSc,
and Louise-Marie Harding, BSc, for their help with data analysis. Most of all
we thank all the patients who assisted with the study.